Just wanted to take this time and write a little bit because things have gotten progressively worse and I am supposed to be in the hospital tonight. I am at the point right now where things are so bad that I really should be in the hospital. Dad and I have known for a while that I needed to be in the hospital, but I really didn’t want to go. I was really hoping that I could avoid it. After all, I really didn’t want to live whatever time I had in the hospital. Plus… there really isn’t good hospital for me to be in around here. If I was to go to the hospital, I really need to be in California or Indiana because they are the only ones situated to handle my complicated illness and me.
I am so complicated and such that going to a hospital really takes a lot of thought because it isn’t as “simple” as people might think. Even though people think that going to a hospital is the BEST place to be because it might SAVE your life, it won’t always do so in my case. In fact, it can actually kill me because I can’t be treated like a “regular” patient. I am so rare and complicated that it is only few hospitals that really are situated to handle me. Plus… I am so very fragile that they have to be so very careful because the very wrong move can easily kill me.
As I suffer from a rare and life threatening illness, there aren’t many doctors capable of handling my illness. Not many doctors are knowledgeable about them and therefore, all doctors are not able to “treat” me. I suffer from so many illnesses and so very complicated. Some might say that I have the “luck of the draw.” I have a severe neurological disease that is extremely painful known as Reflex Sympathetic Dystrophy. It is one of the most painful diseases that you can have and it actually ranks as #1 on the McGill Pain Scale, which means it is the most painful disease to exist. As you can see on the scale, Arthritis pain is ranked about an 18, Cancer pain is 24, Chronic Back Pain a 26, and then RSD/CRPS is ranked a whopping 42! On the McGill Pain Scale, RSD pain rates the highest, even above cancer, amputation and childbirth. Most people don’t understand that even a slight breeze across the RSD affected area causes excruciating pain. Even loud noises affect me. I am basically hypersensitive in every aspect you can imagine. In addition, everything is magnified for me so that a simple cold to me is like the Flu or a simple needle prick is like someone sticking a knife in me. The sleepless nights are the worse because I cannot tolerate the pain. Even the sensitivity of the blanket on me is just too much to bear. I can’t even wear a shoe or a sock on my foot because that is where the disease is the worst, as the RSD started in my left foot and left leg. The disease then took over my entire body and affected everything that relied on the nervous system.
Not only do I suffer from that severe painful and debilitating neurological disease that affects everything on the nervous system, but I also suffer from severe autonomic dysfunction, severe gastroparesis, and even a pituitary brain tumor. In fact, I found out that the form of gastroparesis that I have, which is a condition that reduces the ability of the stomach to empty its contents, but there is no blockage (obstruction), is the most severe form to exist. The form that I have is actually called Acute Intestinal Pseudo Obstruction, which is when there are symptoms of intestinal blockage without any physical blockage. This is in addition to a paralyzed or “dead” stomach. So… basically my entire GI system is gone. I have dwindled down to 69 lbs. and unless something is done and done quickly, I will end up dying.
I am literally wasting away. I am so very sick that if I was a male, the doctors said that I could not exist. I was told that males couldn’t live at the levels that I am. Fortunately, I am a female and therefore, females can live at a little lower level than males can. I always knew that females were the stronger sex. LOL. However, I am borderline even with that survival level as they can only live down to a level of 12 and I am already at that level. So action really needs to be taken quickly if I am going to survive.
Only 6 hospitals are really capable of handling me. I need a rare and complicated transplant known as a multivisceral transplant, and not all hospitals in the country perform them. In fact, only 6 hospitals in the country do them, as they are extremely rare, dangerous, and run the highest rejection rate of all transplants. As of the current year (2012), only 35 of these transplants were done. So, it isn’t like there are a lot done either. So, I really need to be in the best of hands when having this operation as well because of course it will help the recovery process since the one-year survival rate and five-year survival rate isn’t too good. During this transplant, I will be receiving a new stomach, small and large intestine, pancreas, and liver.
I have known for a while that I really needed to go to the hospital. Dad has known it too. However, like I said before, I really was hoping to avoid it. I also can’t really just go to ANY hospital and therefore, it would be difficult going to California or Indiana, which are the hospitals able to handle me because of the financial expenses. As it is… we are having a great deal of problems paying out bills as it is. We don’t even know how we are going to pay for the Indiana trip because we are headed to Indiana on January 20th because that is where I will be having the multivisceral transplant. I just hope that I will be able to make it that long.
Not only do we not know how we are going to manage to pay for the trip to Indiana, but we don’t even know how we are going to pay for my treatment in general. My treatment is extremely costly because it the cost of my treatment is astronomical. Even though there isn’t anything that my parents wouldn’t do for me, the cost of my medication, appointments, deductibles, traveling expenses, etc. are so great that they have gotten to the point that despite the cuts that we have made, we can no longer afford them. So… I have tried numerous ways to raise funds such as make posters, send messages through Facebook, contact media, etc. but nothing has really come about. I really was hoping that perhaps something would help because the money is so very important because without it… I won’t be able to receive treatment and I will definitely die. However, I haven’t been fortunate enough. It really bugs me to see all these other stories aired in the media and despite how many times I have tried to contact them (whether it was the news, talk shows, etc.), I cannot be featured. I need desperate help because my life literally depends on it and no matter what I do… how hard I try… nothing seems to work out. It is so unfair because I am literally watching my life deteriorate. I am watching myself die.
I have gone to the doctors today and despite knowing that my organs have been failing me and that the Better place was in the hospital, my bloods have gotten to the point that they are too low as well. I really MUST be in the hospital. However, I am still hoping to remain at home still. I still want to be at home because like I said I don’t want to live whatever time I have in the hospital. Plus… every time I am in the hospital, it does cost money. It costs money for each test I take (even though the insurance does pay for it, I still will have to pay a copayment and it does add up quickly) and I can’t afford it. It is also Christmas time and I don’t want to spend Christmas in the hospital.
The doctors have already stated that without a miracle, I definitely won’t be here next holidays. Therefore, I really don’t want to spend these holidays in the hospital. I really want to make these as “special” as can be… not only for me, but also for my family. Even though I know that the best place for me is in the hospital, it really is more important for me to be with my family during this time. It is something that can never be redone if I miss this opportunity. So… I am hoping that I make it through the holiday season at home even though I know that it really isn’t the BEST thing to do.
Since tonight is Christmas, I can’t believe what my life has turned into. This is supposed to be such a HAPPY time. However, where people are having such a wonderful night with their families and feeling so grateful for what they have and such, I am here being tormented by pain and living in all my suffering and agony. I am wondering how my life has turned into this. I am wondering how I went from a world that I had everything… was able to walk, eat, had friends, was top of my class, was going to be a great doctor, was going to get married, was going to have a family, etc. went to a world filled with nothing. My world that was filled with so much promise literally was robbed from me and went to a world of HELL with nothing but isolation and emptiness. Everything was stripped from me including such precious and everyday things that people take for granted like eating, walking, friends, etc. I spend all my days on the couch and by myself. My only companions besides my parents and brother are my animals. They make my BEST friends. Without my cat and dog… and of course my turtle… I definitely would have no one. In fact, I have deteriorated so much that I basically spend the entire day isolated in the house and sleeping on the couch because I am too sick, weak, and in too much pain to do anything else. I literally calculated that the actual amount of time in a 24-hour day that I am off the couch is like 1 hour. I even hold in going to the bathroom because it hurts so much to get off the couch and is to exhausting. My life certainly shouldn’t be like this.
But I am hoping that Santa brings me what I wished for this year. I don’t understand what I did to deserve all this. I didn’t think that I was that “bad” of a person to deserve all that has happened to me. In fact… with all that I am going through… I don’t think even the harshest person should get what I am going through. I don’t wish this on my worst enemy. It is horrendous. My dad watches me and I can see the pain in his eyes. He keeps saying how he “wishes that he could take all this away from me.” However, I told him “he would never be able to last… not even a minute!” He has no idea how bad it is like because even though he might have an inkling by seeing what I am going through… believe me… he has no idea. What I feel and what I project are two different things.
In the meantime, I guess I have to hold on and wait for my MIRACLE. I received a folder today from Indiana. I never thought that I would be receiving a transplant. I feel like such a horrendous person, especially during this holiday season because I am basically wishing for someone to die so that I can live. I am fortunate enough to be able to receive either an adult or pediatric transplant because I am so very tiny. So, I am feeling kinda worse because in a way I am praying that a child dies. I feel so cruel by even saying that. But, when I say this to my dad… my dad says “that is the way it goes.” I just feel so horrible. I just hope that it happens in time because I don’t have long to go. Do you know how many people die waiting for a transplant? I am not just waiting for one organ either… I am waiting for a kind person to donate like 5 parts. It takes a special person to donate their organs… let alone donate all these needed parts that I need because I need all my organs to come from the same donor.
Even though I really wanted to have the transplant in California, I am kinda feeling ok about having the transplant in Indiana at IU HEALTH. After speaking more and more to the surgeon there and staff and learning more about the program, I am getting more and more comfortable there. I found out that out of the 35 transplants that were performed this past year, 15 were done there. So… it is best that I have it there because they have done the most and are probably the most able to deal with all the complications that will arise.
Even though it can be months before I receive a transplant, IU Health is supposed to have a really good turnaround rate for transplants, I will be on the National List, so my organs can basically come from anywhere. Since I suffer from intestine failure and such a bad state, I am considered “Status 1.” This means that I am top priority and pulls from a larger area first to increase chances for getting a donor. Currently, there are 257 people waiting for an intestine.
I am going to be so busy when I go to Indiana on January 20th. The hospital is so big. In fact, it is so big that there is a PEOPLE MOVER to take you around the hospital. Can you believe it? It is actually a “train,” but they call it a PEOPLE MOVER.
I have to undergo so many evaluations/tests in order to have this transplant. I guess they really wanna make sure that you are HEALTHY to have this transplant in the sense that they aren’t wasting the organs. I am having like ever test/exam under the sun. After all this… I definitely will know my entire body inside and out. What scares me though is I don’t know how I am going to pay for all of this because I can just see how much this is all going to cost. Even if the insurance does pay for the test/exam, I still have the copayment to pay, which is about at least $30 to meet with the doc and then at least $100 for the test (depending on the test). I really hope that I get some support or funds donated because I really don’t know how I am going to afford this. I can just see my bill after this. I still have to worry about so many other costs such as receiving my current treatment at home, the transplant, the transportation to the transplant center once the organs become available, etc. This is only one small piece of the puzzle and it can be so costly. I just hope that I get help because I need some “light” at the end of the tunnel. I have to go for numerous blood tests, x-rays, liver biopsy, psychologist evaluations, social worker evaluation, dietician, CT scan of abdomen and pelvis, Cardiology consult, pulmonary function tests with ABG’s, ultrasound of extremities, EGD (Esophagogastroduodenoscopy), colonoscopy, meetings with the transplant surgeons, dental appointments, vaccination appointment (PPD, pneumothorax, HIB, Mengiococcal), Mammogram, Pap smear/Pelvic, Echocardiogram with Doppler and Bubble Study, Dobutamine Stress Echocardiogram. Some of these studies I am surprised that I need such as the dental exam and the mammogram, but I need the mammogram because they need confirmation that I am free of tumors, cysts, and/or cancer. I need the dental and pap smear because they want to confirm that I am free of infection or other disease processes before transplant.
I found out that the surgery is really going to be intense. The length of the surgery will be over 12 hours long. I kinda expected it because they are basically “gutting” me out and replacing my entire abdomen. I will then stay afterwards in the ICU for at least a week. The length of the hospital stay will be at least a month. The patient one-year survival is about 79% and IU Health has an above average. So… I am happy about that.
Like I said before, I really need to raise funds because I don’t know how we are going to be able to afford this. Even though the transplant is “covered” in Indiana, it is really only a needle in the haystack because without further funds donated from people, we don’t know how we are going to be able to even afford the transplant. Even though the actual multimillion-dollar transplant is covered, we still need funds for traveling, copayments, deductibles, doctors, living expenses, medications, etc. Even though we are “covered” for the transplant and some other things are “covered,” we still have to pay copayments toward everything, as well as deductibles. Every time I am hospitalized, go for a test (x-ray, CT scan, MRI, blood test, etc.), see a doctor, get a medication, etc. I have to pay a copayment. These copayments add up very quickly, as we pay over $30,000 a year in copayments. Just this past hospitalization in California, we had over $1000 just in copayments… not to mention the other costs. In addition, we still have to factor in the costs of the doctors, medications, etc. that are not covered by the insurance because not all the doctors that I see or the medications that I take are on my insurance plan.
I was also talking to my family and it appears that my entire family won’t be able to be with me during this time I undergo this radical and risky surgery. When the call comes, I will have to travel to the transplant center via private plane. As it is, I will have to find a way of paying for this because it will cost about $12,000-14,000. However, we have no choice because we can’t relocate to Indiana prior to the transplant because it would mean my father wouldn’t be able to work. My dad needs to work as much as he can before the transplant because when the call comes that I have to have the transplant, I will have to be in Indiana for about 2 months or so and he will have to be with me during that time, which is time he won’t be working. We have no idea how we are going to make an income, pay bills, or have the business survive during this time. So… it is important to get as much money as possible during this time.
Anyway, when the call comes, my dad and I will travel to Indiana via he private plane. However, my mom and brother won’t be able to come because they will have to stay behind since not all of us can go on the plane. Only me and one other person can go and therefore, only my dad will be going with me. I thought that perhaps my mom would be able to meet me in Indiana so she would be there when I woke up, but unfortunately due to expenses and the business, she won’t be able to. It really bothers me because I really would have loved to have her there… especially when it is so life threatening. But I understand that we just don’t have the finances.
Since my mom can’t always be with me, I did buy her something to always know that she is with me and I am always thinking of her. I bought her and me matching bracelets. They have hearts and this way it is bracelets that we can “bond” over. This way we both can know that no matter how far we may be from each other, we are never far in thoughts.
Well… going to get going. Just wanted to write and wish you a very Merry Christmas and let you know what is going on. Since I am trying to avoid the hospital as much as possible, I have another doctor appointment on Wednesday and Thursday. I will have my bloods taken again. If my bloods continue to drop, I probably will have no choice but to go to the hospital. But until then… I am hoping that I can escape that. I really don’t want to go to the hospital. But, with all the bleeding and such, I don’t know if I am going to make that possible. I am bleeding too much and I am way too thirsty for my bloods not to fall further. But hopefully they won’t.
I am also scheduled to have a ketamine coma on Saturday. So… at least I will get one day of a “vacation” from this illness because at least when I am in the coma I am knocked out from the pain and out of reality. Unfortunately though when I wake up… everything is back to where it began. I just hope that even though I need a much higher dose that isn’t FDA approved and I have to go out-of-the-country in order to get it, I am hoping that the ketamine is at least stopping or slowing the progression of the illness because it is spreading like a wildflower. I am hoping of that at the very least because I can’t afford for it to spread and takeover anymore because it is basically everywhere and wreaking so much havoc. However, at the very least, I am pain free while I am “under” the coma. I just have to deal with the hallucinations and nightmares that accompany and are associated with the ketamine, but I will take them over the horrible suffering and pain I am anytime. After all, without the ketamine, I am suffering 24/7 and I don’t get any break whatsoever. So… I kinda really am looking forward to this treatment. Kinda sounds weird saying I am looking forward to being put into a coma, right?
I have been reading a very good book as well. Since I don’t sleep because of the horrible pain, I have been doing some reading. It is called THIS IS WHERE I LEAVE YOU, and it is written by Jonathon Tropper. I strongly recommend it.
Well… talk to you soon. I better get to sleep if I want Santa to come and have any chance of him bringing me my wish. After all… Santa only comes when you are “sleeping” and I don’t wanna miss him. Maybe I will get a miracle of “getting better.” Maybe I will be lucky and get my wish for either “getting better” or at least getting help from others. I really hope that if I can’t get the funds from people, I hope that at the very least I get the prayers, support, and encouragement from others because those are “free” and can be very powerful as well. It has been a long a difficult road… especially now… but knowing that people “care” and are behind me supporting and encouraging me… it really makes a HUGE difference. It really gives me the strength to continue on. I am also hoping that I receive some funds or even a response from the media because I desperately need all the help that I can receive. Even $1 is one less dollar that I have to come up with. I don’t know how I am going to be able to afford all this treatment and unless I come up with the funds, I don’t know if I will be able to continue receiving treatment or even be able to receive the transplant. Even though I have been so fortunate for my family to have given me so much and provide for me, the bills have become too much and as a result, we can no longer afford the treatment despite making the necessary cuts. Therefore, I am hoping that others will come to my aid and help me. I really don’t want to die and I am hoping that others will help. I have tried one more time to send out a Facebook message for help, as well as posting some flyers in stores. But nothing really has come about. At least I have tried, and at the very least no one can’t say, “I haven’t tried all that I could!” I definitely haven’t gone down without a fight!
Well… going to get going because not feeling well. Hoping that tomorrow will be a better day and I make it to New Years. Hoping that I get the “help” from others that I desperately pray and wish that I will get. Happy Holidays.